Halfway There

I believe we are officially halfway there. Radiation treatments over halfway done (only nine left after today). Chemo, two out of four visits to the hospital, done. Halfway is all of the ambivalent place that its designed to be. The glass hall full or half empty discussion comes to mind this week and our mixed emotions characterize our being at this place.

We are thrilled that we have made it to this point, but also understand what still lays in front of us. We are happy, but we are cautious and tired. Things are beginning to hurt, sting, be sore, and hair is (just slightly so far) beginning to fall out. Tempers are shorter. We are still in good spirits, but are more subdued and are giving ourselves more breaks. Just sitting around not saying anything is o.k. Quiet time is richer and more precious than ever. . . and that's probably why its taken me awhile to sit down and make this entry.

Andrew is good. All of you who know him, know that his is strong in body and character --and that is serving him well. Every time we go to radiation we meet this couple from Watertown, who travels all the way here for therapy. The Mr. has a tumor on his calf the size of a baseball that he is grappling with. He always says to Andrew, "How do you do it? How do you have so much energy!" He does seem some days to be the most lively patient in the room.

While he was in the hospital for four days, he still had to go down to the basement for radiation every day. The first day he insisted that he would walk and not go in a wheelchair. All the nurses were flummoxed. "Do we let him walk?" They decided as a group it would be o.k. but that someone had to walk with him just in case. This was the first time any of their patients had done that. He walked every day to radiation. During his first chemo visit he had surgery to get his port and feeding tube installed so he couldn't walk, but I know that from now on being able to walk to radiation while he's in the hospital will be a marker of sorts. . .

Both the radiation and oncology crew are charmed by his accent (of course)so that is in part why he gets away with such things. The radiation crew decided that they wanted Andrew to teach them "English." He quickly obliged by spending part of the day writing a list of English expressions, with their translations, and their phonetic pronunciation. You can hear the strains of " and Bob's your uncle" and "Is thou fettling well" now wafting across the Radiation Therapy floor. . .

Making comparisions is hard not to do. Comparing Andrew with other patients we see. Comparing me with other support people I see. Comparing one day with another. Comparing one hospital stay with another.

This second hospital stay was very different in many ways. First he did not have surgery which really knocked him out the first time and put him bed and in hospital gowns for most of the stay. This time he was determined to wear his own clothes and every day he had his jeans and t-shirt on. (T-shirt slightly modified to fit the tubes going to the chemo port that is in his shoulder). This time he was more determined to get out and about and I would find him sitting on the window sill in the corridor and not always in his room.

Food and food smells went down well at first, but at the end the hospital food grew to be abhorrent and I was bringing him things from the cafeteria and home to entice him.

The changes in his reactions to sound and light were perhaps the most dramatic. He has insisted on each hospital stay that we bring a table lamp from home. "Hospital lighting is awful" he complained when he first found you he'd have to go in. The warm subdued light from that lamp by his bed was about all he could handle by day four. Same for sound. The noise of the nurses and shoes in the hallway became unbearable and he asked me not to text message him because he found the ping of his phone grating. Rustling of newspapers, volume on t.v., furniture leg screeches, the repetitive drip of the I.V. machine --- all almost too much to bear by day four. Rapid movement on movies became too much to watch and caused headaches. The slow motion of black and white movies on AMC became the standard T.V. fare and then nothing at all --- eyes closed, no moving, going into the zone of just passing time.

The incessant drip of the I.V marked the time like the tick of a clock. On Saturday, Day 3, Andrew figured out that the drip was going to slow to let him get out of the hospital by Sunday night. He asked the nurses to see about speeding it up, and they obliged him. By the evening of Day 3 he was up to speed and on schedule for an evening departure. By 6 p.m. Sunday he was counting the milliliters left in the bag and computing the time in minutes until it would be done. His Ukranian nurse, Nada (who speaks five languages) kept coming in to check and and took his impatience and grumpiness in stride. She did everything she could to facilitate him walking out the door as fast as he could, and when the drip finally died she had him ready to go in ten minutes.

We jumped in the car, and I felt like I was breaking someone out of jail. There was a shared feeling of elation of leaving the hospital in the rear view mirror. When we arrived home, I had the fire set in the fireplace, Fox soccer channel tuned in and the home made beef stew he requested all ready for him. The dogs were excited to see him, but calmed down quickly as if they new he couldn't take much more than that. We all settled down to our usual places, and fell into a comfortable silence (without the staccato ping, ping, ping of little drops) and the lovely everydayness of being home. . .

My Father's House

Today Andrew returned to the hospital for his second 96 hour round of chemo. He checked in after his radiation treatment and at 8 p.m. this evening he was hooked up to the bag and rolling. Three hours down, 93 left to go. Socks are pale green with white dots. . and he looks good!

This was exactly what my friend Carla said when we visited him this evening. Carla and her husband Paul traveled all the way from Baltimore to help us out with this round. Our dogs are ecstatic as they are receiving lots of love, treats and big walks from Carla while Paul's been busy in the kitchen since he arrived and already whipped a marvelous veggie lasagne that was waiting for us when we got back from the hospital.

"He looks great." Carla said as we were headed to the elevators leaving the oncology ward, but she was also crying. "It's hard to see that (Andrew hooked up), it makes it so real." I knew exactly what she was feeling and the last time I was in exactly that same shape when I left him there for the first time. I hugged her and said "I know." But I wasn't crying this time so I guess that means I'm getting used to this strange routine. Is that weird? I not sure. . .

The difference between our first check in at the hospital and and second was quite striking. The first time we were quiet and hesitant and wondering and tentative. Eyes wide open we were almost afraid to touch anything. This time Andrew strolled in his room and started moving around the furniture to suit him. "Could you help me move this bed over to the left," he asked the nurse as she was trying to take his vital signs. He tilted the bed up to the exact angle he wanted, rearranged the covers and pillows and then was out of the room in the next moment to see which end of the hall had the best views. Definitely we both were a little more comfortable with this.

Our relaxed state was surely a result of our knowing what to expect but also probably a residual from our trip to my father's house this past weekend. We both wanted to take the best advantage of our time before he had to go into the hospital again, particularly since he was feeling so good, and we agreed without much conversation that the best way to do that was by visiting my Dad who lives about three hours away from us in small town in the foothills of the Green Mountains.

We both love visiting my Dad and his house has become quite a refuge for us. This started years ago when when we would travel up from Virginia to visit both he and my Mom (divorced for 17 years, but still

both living in the same very small town.) My Mom, God rest her soul, was quite a planner, and would have a list of things we had to do with her which started the minute we walk through her door. My father, on the other hand, had and continues to have absolutely no expectations of our time. Its do whatever you want to do at Dad's house, on your own time and in your own way. No strings attached. Time at my father's house is down time. Real down time.

This is enhanced by three major features of

his home --- The house he grew up in that has been renovated by him to be the ultimate man cave --- 1. He has things in it that we really enjoy but we are far to cool to buy for ourselves (Lazy Boy

recliners, fuzzy blankets with animal pictures on them);

2.He has food in the refrigerator we enjoy but would never dream of buying or eating at home (sliced pepperoni, apple turnovers, an

d Klondike bars) and 3. he has many things that have not been available for sale since the 1970's but are cool and enjoyable and just plain weird (a turntable with vinyl records, two shelves of very tacky knick knacks).

The dogs love it because there is a big yard, and Andrew loves it because he can sit in a big chair and watch soccer with my Dad

for as long as he likes, usually with a big fire going in the fireplace. I love it because I don't really have to talk to anybody. My Dad and Andrew sit and chat and I sit and read, MY favorite

thing. Its the ultimate kick back place. It also helps that he doesn't have good internet connection and that the valley he lives in is on the edge of AT&T's coverage so our cell phones only marginally

work. No email or phone calls does wonders for the blood pressure!

The enjoyment of going to my Dad's has also been enhanced recently by our finding an authentic fish and chip shop in the next town over. Little Britain's fish and chips are totally up to par to any we've experienced in England, and make for the perfect bulk-it-up meal before chemotherapy treatment. Amazing crispy batter dipped fish, juicy and tender on the inside --- absolutely not health food, but just what the doctor ordered in this case.

We topped off with two strawberry Ta-Ta cupcakes (use your

imagination) from the Crazy Russian Girls bakery just around the

corner. Ah heaven!!!

So we were all pretty mellow and satiated when we got in the car to head back to the 'Cuse on Sunday. It was tough to leave. My Dad hugged Andrew good bye (Something he doesn't really do) and said, "I'm really glad you came, because its a lot better to see you in person and see how you are than to hear about it on the phone." While I guess that was in fact some kind of ending, it sure made for a nice beginning, of this, our fifth week on this journey! Day #29 is looking good. . .

Happy Anniversary

Monday, March 15 was our 8th Wedding Anniversary. Still newlyweds many tell us. . . but we've been through a lot in those eight years so its seems like a lot longer---good longer I mean. In actuality we HAVE known each other for over 25 years although we haven't been together that long. Our pasts have intersected many times (the only bar I was ever thrown out of was the Texas Wisconsin border in Richmond, VA and Andrew, who was a bartender there, is the guy who did that---but that's a longer story for another time). I'm sure that contributes to the feeling of longevity. But we both agree, regardless of the real time, we have been soul mates forever.

Our anniversary gift to each other was the fact that Andrew

is feeling well--- really well-- well enough to enjoy a nice dinner at a fancy restaurant, with a promise of a movie later this week, salsa dancing post-treatment and 4th of July in Seneca Rocks.

I am so excited about how good he feels and I think our doctors share that sentiment. "I feel normal" he told me the other day, and I believe him as there are no indicators to make me think otherwise. He's not jogging around the block, but he's active---walking dogs, making fences (see pic), going to school, shopping (buying surprise flowers

for the wife), making dinner -- right now I can hear him outside deconstructing our back porch---but most importantly he's eating like a horse. (note the chocolate tower on the dessert plate) People comment on how good he looks, and they are not just being polite.

The weather is feeding our upbeat mood by turning sunny. All the snow has melted and the smell of spring is in the air. The trees are just starting to bud, and yes, even here in Syracuse (or Siberacuse) the flowers are pushing their heads up out of the ground.

I find that because he is doing so well I am feeling very happy and lighthearted (maybe also because its spring break). With help also from my music therapy (favorites on the iPod this week are Fleet Foxes "Your Protector," Anya Maria "Satellite Heart," and Coldplay "Cemeteries of London" and thank you Carla for that iTunes gift certificate---Can't wait to download!!!!) and my work outs with Frank (OMG) I am in a very good place. I realized that I was actually skipping down the

street the other day (which I attempted to self-document for this purpose, not so well, but you get it--cars driving by, people wondering who that person is skipping while waving her iPhone over her head).

I know Andrew is sharing my upbeat attitude. "Tempus f---ing Fugit" he just proclaimed with gusto to our friend Zeke and the most beautiful baby Thomas who wandered over to visit and watch the fence reconstruction. And this is not a forced enthusiasm. I can tell he really means it.

I am wondering is it endorphins kicking in or just this shared moment of crisis which seems to be putting everything into such acute focus and making the ordinary so extraordinary. Whatever, we are enjoying it.

Today at radiation, one of the patient's who has recently joined us in the waiting room on a regular basis (male, 50 ish), looked over at Andrew and said "Do you mind if I ask you what kind yours is." That's all it took for the cone of silence that keeps you separated from each other to fall away and for an open and poignant conversation about chances, diagnosis, fears, and determination to take its place.

It was stunning and powerful. Andrew touched that guy gently on the shoulder when we left and he told him "You'll be O.K." My brave and compassionate husband of 8 years and my soul mate of forever just being the person that he is. . .

We do know that this temporary blissful state is probably the calm before the storm but we are almost half way through radiation (zap # 12 of 33) and after next weeks hospital visit will be 1/2 way through chemo. Both Doctor G and H say just keep on eating and get ready to feel bad and next week when he goes in for the second round of chemo, that will probably be the turning point. So we know it is going to get tougher, but the 'tude is good, the socks are argyle and this week is a good one!

Week #3 (Close enough) - Talking to the Virgin Mary and Other Magical Thinking

Yes, folks that is a picture of Andrew washing his car this weekend. You can see our dog Moe's reaction, which echoes my own, "What the hell is he doing?" He slipped out the back door and started before I could say anything -- and since he feels good---what can I say.

"Its all about attitude!" he told me this morning as we getting ready for our first official once-a-week visit with our onconologist, Dr. G. Couldn't agree with him more.

We love Dr. G. and he'd been on vacation since our visit to him about a month ago, so we were looking forward to seeing him. Dr. G is young, hip, and one of the most empathetic and thorough of our many health care providers and we were anxious to hear what he'd have to say about where we are now. Andrew isn't doing any driving so I did the taxi driver thing and got us both to the office safely with Andrew only telling me how to drive once. (pretty good)

Then we both went into our waiting room

routines. Andrew reads a magazine and I watch the other people come and go, almost always couples, and speculate on which one of the couple is the sick one. I often only find out if I am right when they call them back to see the doctor (cause they always call only the patient by name). This of course is also a comparative study - me trying to imagine what we are going to look like in eight weeks. But, then of course, there is nobody else there wearing striped socks. . so it is hard to compare.

We finally get called back, and A gets weighed

(only lost 2 pounds), blood pressure is lower (which is good)

and he's got no complaints except some blistering around the lips. Dr. G says this is normal and he's pleased about how good Andrew is looking and feeling (must be the socks). Unlike our hotshot surgeon in Rochester who should have told us all this, he explains in detail why surgery was not a good option (removal of voice box and the swallowing mechanism would have been required, yikes!!). Then he lays it on us. Because we are not doing surgery we have to do FOUR rounds of chemo instead of two; each 96 hours straight, each 30 days apart. And then we will redo all tests to see if the mission is accomplished sometime in June. I have to say that took us back a bit . . . but we took it in stride. There's no getting off the flight was you are flying across the ocean. . .you know what I mean. To quote my hub again, "Its all about attitude!"

Now, I myself am willing to rely on other kinds of support as well . . and as many different kinds as I can get. For example, once a day, while I'm walking my dogs I try to visit the Virgin Mary who lives around the corner from us. She has a stone house that I find very cool (actually she probably finds it most cool also in the winter, as I don't think she's got heat there). As a "recovering Catholic," as my friend Sandy and I used fondly call ourselves, I am well versed and trained in the art of magical thinking. Some may see her as just

a ceramic statue in a groovy hand made stone vault, but for me she's a link back to the strong religious background of my youth and the mystery of belief. Its a little hard to explain this about myself, since I haven't been to Mass in years or practiced Catholicism in decades, but this shrine has a strong pull on me. Its probably also the reason I collect rosary beads, which I never use as directed, but that I seem to need to have nonetheless. I have some that were my grandmother's, my mother's, some from Ireland, and some that I don't have a clue where they came from. I love how they feel, how they are worn through use, and what they project. Whenever I get on a plane I always take a set with me, and when my cousin's kid joined the Marines at age 17 (our only family member in the military) I gave up my beautiful ebony ones that were my grandfather's (blessed by Pope John 23) as I was sure that they would help protect him from harm. I will put a set in Andrew's suitcase the next time he goes to the hospital. He won't know they are there, but that's o.k. The beads emit the same feeling I get from the Virgin Mary. And so regardless that I might look like a wack job, I stop to talk to her on my daily turn around the block. . .Hey, it doesn't hurt. . .

Many of you have sent us your version of magical thinking. . . warm, good, positive energy; glowing light, prayers, hugs, best wishes, and jokes. We just want you to know that they are all working! With your support and a good word from the Blessed Virgin Mary around the corner we are sure to make it through this o.k. Chemo, Scheemo. . .it's all about attitude.

Love ya. . .

Week #2 - A return to normalcy

I've been teaching students for years about the emotional difference between something that's horizontal and something that's vertical, but its amazing to see that difference played out in Andrew's actions and demeanour. Having him up and out of hospital bed without any tubes hanging out of him, walking around in street clothes has made an amazing difference. Except for a little tiredness, and the fact that he isn't driving, things seem almost normal. We are all much happier. He's spending his day's talking to friends and family on the phone, and catching up on email and the Fox Soccer Channel. So expect to hear from him, if you already haven't. . .

He was even able to bear a whirlwind but intense visit by my Uncle Wade, Aunt Sandy and two of my cousin's kids on Tuesday. I had bought them tickets for a Syracuse game at Christmas time, thinking it would be a great idea to get them to come see us. Of course we didn't know then how our scenario would change. On the day of their visit, I arrived home to find the table set for dinner and our guests fixed up with drinks, sitting around talking about the differences between English and American Soccer. Wow, so normal. I kept looking for signs of fatigue or discomfort (because my aunt can be a little intense sometimes!) but they never materialized. . . He made it through a family visit without a blink --- now that's a test!

So this week we are just doing radiation every weekday at 11 a.m. That usually takes 15 to 30 minutes a visit -- not too bad. And two of those visits were cancelled this week bec

ause the super high tech amazing machine that they been using on him broke down (now that's a little unnerving--- Andrew likes to say the rubber band broke in it). This thing is a combo CAT scan and "radiater." The put him in and it takes pictures from over 50 different view points of the tumor, then they roll him out and calibrate it to just hit the tumor, and roll him back it for the radiation. Pretty amazing stuff (when its working. .. ) the machine should be back up and running today and we should be back on schedule for treatment. . .Except for this-- week 2 has been running pretty smooth-- for him.

My other patient, our dog Sophie, who got bit by another dog, seems to be faring worse than he is. Every time her wound we begin to heal she would scratch it open again and

make it look far worse than it was originally. When Andrew came home from the hospital and saw it he almost had a heart attack. Since I had to go off to work, he was insistent that he would walk her to the vets (about 1/2 a mile away). This was our first major "discussion" about the limits of his activities. I felt like I was talking to my father who is 80 years old and who I can't seem to keep off his roof. (totally reconstructed his chimney by

himself two years ago. . .) We compromised in that I would drive him over and he would walk back. The anxiety was incredible, like letting your kid walk to school for the first time. My insistence on regular mobile updates, irritated him, but he did it. Dog and owner arrived home with no incident and neither seemed the worse for wear. It seemed to be much harder on me than them, actually. Mostly importantly after a third visit to the vet they FINALLY decided to put a damn bandage on the thing. (Now there's a brilliant idea!) So Sophie is now is sporting a dapper red bandage, which only partially bugs the hell out of her, and seems to be working. . .

I have to say the best part of this week (beside having Andrew upright and at home; well actually there are two best parts, #2 coming up in a minute) is that I haven't had to cook. Friends and neighbors have flooded our house with goodies (Amy's spiced beef and squash soup, Jen's chicken pot pie, Barre's chili, Jeff's macaroni and cheese. . . ooo la la). We are eating high on the hog and all I have to do is microwave. Thank you all for that. Its been delicious.

Second best, is my visits with my personal trainer, Frank. Now somewhere in this process I got the idea in my head that that in order for me to make it through this and be as much help as I can to Andrew I have to be strong and stay strong. . .experience has shown me that when I'm physically strong I'm stronger mentally and well, as far as I could see, there is no way this flabby ass, middle age body was going to make it through this one without some help. So its been a two prong attack to improve mind and body.

Mind through my iPod and Happy Light. I had forgotten how soothing it was to listen to music! The theme on the Pod is tunes that soothe. Now oddly for me that's a great range from Muse''s "Super Massive Black Hole" to the opera, but it sure does work. You see me walking around with the ear buds in all the time now, something very unusual for me as I generally really do like to hear where I'm going. So please send me suggestions for new tunes--any new

tunes. The Happy Light is a marvelous invention. 10,000 Lux of bright natural spectrum light designed to "lift the spirits, sharpen concentration, and improve energy levels." And i'll be damned if it doesn't. A must for the constant grey skies of Syracuse, New York.

But best of all is Frank. Frank is  totally solid. There's not one bit of him that isn't solid, including his personality and his heart. Frank can size you up in a second and he can tell that I have a mind that's totally willing, but a body that is somewhat lagging behind. This doesn't mean he goes easy on me, he doesn't, but he knows just where to go and when to stop. Well, almost when to stop. The other day just as we were getting to the final set of bicep curls, I could feel the wave of nausea and the flickering of my vision. "Holy Crap, I thought, "I'm going to either barf or faint on Frank!"--- neither acceptable in my mind. It was a dilemna, do I admit my weakness and stop, and just risk it and try to muscle on. Decision was made for me when the second wave came through that took me down to the seated position. "Frank, I think I'm going to have to take a break." He was great, took the weights out of my hand, gave me the sharp and knowing Frank evaluation look, and ran for the glucose tablets for me.

Five minutes later I was somewhat back to normal and had somehow manage not to vomit. A real achievement! Odd thing is that I can't wait to get back to it. I love this getting stronger thing. . .By week 8 of this journey I should be formidable!!!

So bye for now and love to all! thanks for all the support! It also makes us strong!

P.S. this is not me in the bathing suit (although I wish it was) but my ex student and friend Kate Oliver (triathlete extraordinaire) making a statement in Andrew's behalf. . . Love ya Kate!

Day # 4-1/2 - 5 -- And a 1, and a 2, lets a take the A train. ..

I'm back -- finally! Rough couple days of busy-ness with lots to report.

Top on my list that I have to tell you all that I do believe this treatment has seriously impacted Andrew's brain. I walked in yesterday and was greeted by an in depth description and blow by blow of the Syracuse/Villanova game the night before. ( In case you missed it, Syracuse basketball team creamed Villanova in front of a rabid and loud Orange crowd of over 30,000 on Saturday) I was pretty scared. . . this from a man who has previously only had disparaging remarks for the sport of basketball, will not watch it with my father who is a fan, and has reported that he "would rather watch paint dry" than do so (Also has made fun of people wearing all Orange gear, although I am afraid to admit that) I quickly scanned the I.V. bags to see if there was any sign of orange in them as surely some strange had happened. I sat with polite smile on my face, gently nodding head in agreement while he gave me a complete post game wrap up with reports of stunning ball work and cool moves. He had an obvious command of all the names of the players (they all start with J except Andy Rautins, who he complimented for his control of the game).

WHO ARE YOU AND WHAT HAVE YOU DONE WITH MY HUSBAND??

Other aberrant behavior to report: A sudden obsession for the sport of Curling. Did you see that Switzerland vs. Sweden match? It was a real barnburner, huh! Wow!

Such action. He was mesmerized for hours on that one. The New England Journal of Medicine is sure to do their next issue on the healing power of watching grown men be really serious about sliding rocks around on ice and doing that annoying little sweeping stuff. A modern miracle!

Perhaps most disturbing is the new delight in the Lawrence Welk Show. I wasn't half way home before I got a text message on that one. "Lawrence Welk is on!!!" Do I turn around and go back to see if he was o.k. or just keep driving and pretend nothing odd is happening? What was the attraction? The Lennon sisters. Bobby and Barbara's dancing? The outfits?--probably the outfits. . .

Whatever, all these thing seem to all be doing to the trick. Except for a little grumpiness about being woken up all the time, he is emerging for the 96 hour chemo drip in good spirits. Not a lot of discomfort to report, still eating (although he's lost his taste for coffee), and able to take the dogs for a walk today after I sprung him out of the hospital this afternoon. So far, so good.

Better than me who somehow manage to piss-0ff the parking attendant at the hospital garage the the other night because I threw my license at her (its a long story involving not enough money and her terrible attitude and my short temper). She called in her 300 pound supervisor to protect her from me. (I'm not kidding). Who stood here being very big and saying nothing, while we finished our "transaction." It was a classic scene with cars piling up behind me. Myself doing everything to not jump out of the car and pull all of her red hair out of her head. Luckily police were not called. "Yes officer, I did assault her with my license, all 2 ounces of it. Yes it was a close call as it almost hit her body. Yes officer I promise I will not throw my license at anyone again--- even if they are particularly awful people."

I'll sneak in here a picture of Andrew from the hospital that I promised not to post -- but I will anyway because its funny --- which seems to be the theme of this night's entry. A sense of humor really does help keep it all in perspective and we seem to be keeping ours for the most part.

Andrew will be home now until he returns to the hospital in three weeks for another 96 hours of chemo, but he will get radiation every day for 7 more weeks. Thanks for all your emails and greetings that keep flowing in. . . He should starting checking his email tomorrow. . .if he can tear himself way from the Lawrence Welk Show.